Previous Topic

Next Topic

Moving on after treatment for chronic lymphocytic leukemia

Chronic lymphocytic leukemia (CLL) is rarely able to be cured. Still, most people live for many years with the disease, and treatment can help them live even longer. Some people with CLL can live for years without treatment, but most eventually need to be treated. Most people with CLL are treated on and off for years. Treatment may stop for a while, but it never really ends. Learning to live with cancer that does not go away can be hard and very stressful. Our document calledWhen Cancer Doesn't Go Away talks more about this.

Follow-up care

You will probably need frequent follow-up exams for many years after treatment, even if there are no signs of the disease. These follow-up visits are very important. Your doctors will ask questions about any problems you might have. They may do exams and lab tests or x-rays and scans to look for signs of cancer or treatment side effects. It is important that you report any new symptoms to the doctor right away so that the cause can be found and treated.

Check-ups may include careful physical exams, blood tests, and other tests as needed. A benefit of follow-up care is that it gives you a chance to discuss questions and concerns that can come up during and after your recovery.

Treatment of CLL is not expected to cure the disease. This means that even if there are no signs of leukemia after treatment (known as a complete remission), the leukemia is likely to come back again (recur) at some point. Further treatment will depend on what treatments you've had before, how long it's been since treatment, and your health. To learn more about dealing with a recurrence, you may also want to see our document When Your Cancer Comes Back: Cancer Recurrence.

In most people with CLL, the immune system doesn't work the way it should, which may raise the risk for certain infections. Some chemo treatments for CLL may also raise this risk. Your doctor may recommend vaccines or other medicines to help prevent or control certain infections.

People with CLL are at increased risk of developing a second cancer. At least some of this increased risk may be due to the effects of CLL on the immune system. Treatments for CLL may also raise the risk of some cancers. The most common second cancers in people with CLL are skin and lung cancers, although other types of leukemia, lymphoma, and other blood cancers are also possible. It is important to be aware of this increased risk and to report any symptoms to your doctor right away.

It is also important to keep medical insurance. If your cancer comes back, you don't want to worry about paying for treatment.

Seeing a new doctor

At some point after your cancer is found and treated, you may find yourself in the office of a new doctor. It is important that you be able to give your new doctor the exact details of your diagnosis and treatment. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. Make sure you have this information handy and always keep copies for yourself:

A copy of your pathology report from any biopsy or surgery

If you had surgery, a copy of your operative report

If you were in the hospital, a copy of the discharge summary that the doctor wrote when you were sent home from the hospital

If you had radiation treatment, a copy of the treatment summary

If you had chemo or other medicines, a list of your drugs, drug doses, and when you took them